Saturday, January 2, 2010

Happy New Year and Prayer Request

First Happy New Year! We are thrilled that by God's grace we have entered yet another New Year with the most amazing little boy we know, with friends and family who love us, each other to hold on to and God's promises that He will be with us, and you, through each day.

This is a copy of what we put in the bulletin this week to help explain why Mark needs to be gone most of next week and while John's schedule for the week is going to be pretty intense it will still leave us with time to go and see our dear friends a few times and maybe even find the little boy a new pair of shoes as he is just about out of his favorite ones.

Pastor asked me to write something for the bulletin to explain why John was needing to be in Omaha this week. I will try, the simple answer is John is going up for a transplant evaluation. Of course the simple answer only barely skims the surface of what is going on. John’s gut has never functioned correctly and since Mother’s Day of last year has had a very hard time functioning in any kind of stable mode. While his last surgery in May was a success in that he woke up and survived is true, but all in all things haven’t improved much and he has continued to need IV nutrition. The times that he has been in the hospital since this summer have been because his central line has gotten infected by the bacteria that live in his gut. These infections have been manageable so far, but they continue to get worse and the fear is that one of these times they won’t be able to treat with antibiotics either before he is so sick that he dies or suffers irreparable damage from the infection, or that the bacteria won’t be susceptible to any antibiotics and he will die from the infection.

During this week John will go through a battery of tests, some simple and easy others uncomfortable, embarrassing and for John dangerous, also many interviews and assessments and in the end a team of doctors, nurses, social workers, therapists and others will sit down to decide if John is a good candidate for a transplant, if so what exactly they should transplant (small intestine, liver and possibly other organs as well) and if he is now at the point where he should be listed for a transplant or if there are other avenues of treatment that they should try before taking that step.

Pastor and I will be with John through each test and interview, some of the interviews even have as much to do with us and our ability to care for John as they do with John himself. This is a scary process for us, both as we consider what it would mean that John would need/have a transplant and what it would mean if he needs one and is not a good candidate at this point for one. As always we remember that when John was born we were told that he would not survive to leave the NICU and through God’s grace and mercy we just celebrated his 6th birthday.

We would ask you to pray for us through this. At the outset of John’s life and our travels as parents of a chronically ill child we had a very wise pastor advise us that we were not in this for ourselves, and we were not where we were (at that time in the hospital) solely for John, but that we were surrounded by people who were dying without the gospel of Christ and that was our gift to give to them even in the midst of our own sorrow and fear. We pray again as we get ready to make this trip that his advice will ring soundly in our ears, that we will see the troubled people around us at the hospital and be able to give them a Word of comfort and joy. Pastor and I determined during John’s first week of life that we would make sure that each day he had was the best it could be no matter what he had to go through, where, or how few of days there were and we pray also that we can make these days of testing be the best that they can and not let our fears and worries overshadow our faith and joy in being the parents of this amazing little boy who brings joy and smiles to all who see him even when they are having a bad hospital day.

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